The road to home...

Elise has a busy week ahead of her! Because she has been doing well overall, it looks like we should be going home sometime this week. Last week the thought of this worried us due to her occasional episodes of what they believe is reflux, causing her to protect her airway and basically appear as though she is choking for a short period of time. We now know what to do when this happens and we pray it will not be an issue. She has made some progress with the bottle feedings (minimal, but it's a start) and she does not have to go home with monitors, just the ng tube. This makes us more comfortable with taking her home. Although we are a little nervous, we are also excited to begin adjusting into our "new normal." Emma is especially excited to have her little sister come home!

In order to go home in the next few days, there are a plethora of tasks to check off a list. This includes passing a car seat study where they keep her on the monitors for 60-90 minutes to make sure her heart rate and respirations look good while buckled in. She will have a heart test and her initial vaccines. We will learn how to place her ng tube (which I already did today- not as scary as one might think). Ophthalmology will come check her eyes- this is something I had to push for. Apparently the nicu babies do not receive routine eye checks before discharge unless they are premature enough to suspect retinopathy of prematurity. It baffles my mind that they do not check the eyes of a baby with  hydrocephalus and other brain anomalies, as the eyes are an extension of the brain and many of these children can have ocular abnormalities as well. They just leave it up to us as to when we want to get her eyes checked. As an optometrist, I am capable of checking Elise's eyes myself but I'm going to be transparent here and tell you that I am terrified to see something awful and would rather someone else do it before I take a look myself. Not to mention I don't typically have 3 week old babies coming into my office.

Today Elise had her newborn hearing screening. The results are either "pass" or "refer" and, unfortunately, Elise did not pass. The next step is to have a different hearing test performed in approximately one month. They have assured us that this does not necessarily mean she has a hearing impairment, although it is a possibility. It's amazing how quickly fear can step in and completely alter my thoughts and mood when we get news like this. As I said before, there are no instant answers to the questions we have for Elise's future so we cannot live in fear. We started this journey by walking in complete faith and that is what we will continue to do.

“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.” John 33:16